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Some Kid

Throughout my journey in the HPE world, I have had the privilege to personally meet many individuals with HPE. So often, I find that I don’t even have the words to adequately describe the encounter because I’m so humbled by the experience. I can recite the definition of holoprosencephaly forward and backward in my sleep; I can quote statistics off the tip of my tongue; and, I can explain the symptoms and secondary conditions that are common with the diagnosis without missing a beat. Like many of you, I feel as if I may have earned a Ph.D. in HPE, if there were such a thing.

I can tell you all about what our children have, but when it comes to describing who our children are, I do not have concise words to adequately describe them all–I could talk for days on end about all of our amazing kids with HPE. With my own son, Sammy, there are moments when I catch myself saying, “He was some kid.” Not “some kid” as in a random, nameless person; but “some kid” in that he was spectacular, similar to the phrase, “Boy, that was some game we watched last night.

Charlotte's WebSome kid” makes me think of Charlotte’s Web, the classic children’s novel by E.B. White. From the very first line, we learn that the life of Wilbur is threatened. Wilbur, a newly-born piglet, is described as “very small and weak, and it will never amount to anything.” A barn spider named Charlotte is determined to save Wilbur, so she spins a web in the barn that reads “Some Pig” in an attempt to convince the farmer and the surrounding community that Wilbur is special and should be saved.

As parents of children with HPE, we know our children are something very special, but too often, we see the looks and hear the whispers of others in our communities (and sadly, even members of our own families at times) who view our kids like little Wilbur. In her attempt to save Wilbur, Charlotte also created other webs describing Wilbur as, “terrific“, “radiant“, and “humble“.

If you were to weave a web over your child to describe him/her in 1-2 words, what would your web say?


Part Two: Living with a Prenatal Diagnosis of HPE

Yesterday, we brought you ‘Part One’ of Living with a Prenatal Diagnosis of HPE. This entry is the beginning of a series called, Perspectives. Donna, a mother living with a prenatal diagnosis of HPE, shared the first part of her story of what life has been like, since the diagnosis. She told about receiving the news and the grim picture painted of her daughter, by medical professionals. In ‘Part Two,’ Donna describes what it was like to share the news with family and friends, facing the unknown, and the conclusion of her story…for now.

Sharing the news
After doing a considerable amount of online research to better acquaint ourselves with HPE, and meeting with our Pediatric Neurologist, we decided it was time to share this news with our loved ones.  After telling our parents, we decided to send an email briefly describing what we’d learned, explaining there is a wide spectrum of possible outcomes and we really didn’t know what our Abby’s prognosis would be until we met her, but we’re just hoping we can be the parents she deserves.  It was important to Matt and I that we shared the news in this way, because there was no way we could handle repeating the story over and over, answering people’s questions, and dealing with their sadness for us.  Additionally, I was worried that Connor would pick up on the conversation, and this is certainly not something for him to wrap his precious little 4-year-old head around.  We are blessed with a wonderful support system of family and friends, and they understood our reasons for the rather impersonal method of communication.

Overall, the reaction we got from family and friends was very supportive.  Though, it’s my opinion that people definitely should think a bit more carefully before they speak.  I appreciate that people think I’m a strong person.  Thank you for the compliment, if that is all that was meant by it.  But, I’ve had people from the esthetician at my salon to close friends follow that compliment with telling me how they “couldn’t do it”, or “just don’t know if they could be that strong.” OK, just stop.  When people say that, I feel like 1. They are conveying pity, which I don’t want, and 2. They are saying that personally, they don’t think my daughter’s life is valuable enough to give her a chance, but good for me for going above and beyond.  I find it infuriating.  I’m not stronger than anyone else is; THIS IS MY CHILD! I want her, we made the effort to become pregnant with her, and I’ll do everything I can for her, whether she is the child I was expecting to have or not.  It’s called being a parent, giving unconditional love, advocating for your child. I had no idea I would have to start advocating for her so fervently before she was even born. I suppose it’s just preparation for what’s to come, once she’s born.

The day to day of dealing with the unknown
Since my ultrasound on June 17th, I have cried everyday.  Sometimes it’s just my eyes filling up for a minute in the car as I’m alone with my thoughts, or at the playground watching little girls run around.  Other times, it’s real sobbing as I try to go to sleep at night.  But nonetheless, it’s been 114 days straight that I’ve cried in some way.  My tears are not because I’m sad about having a child with special needs; though certainly, if I could choose, I would have my child be healthy and not be challenged in this way.  I am sad knowing that we won’t be able to do many of the things I’ve dreamt of doing with my daughter, and that we won’t enjoy the same type of relationship I have with my mother.  But, knowing that our life will be different or harder doesn’t make me feel bad for myself.  I cry, because I’m just scared.  I don’t know what to expect, and I’m scared of the unknown.  I’m scared that Abby may never make it home to see her nursery.  It was actually only a few weeks ago that I allowed myself to start buying things for her.  I’m scared that I’ll have to break Connor’s heart and explain why his sister died, or at the very least why she requires so much extra care and that I’m sorry, but I just can’t play with you right now, or I can’t go to your game.  He’s so innocent and so excited to be Abby’s big brother; he’s loved her as if she were his own from the minute he figured out I was pregnant!

At the same time I worry she may die, I’m also scared that Abby will live for a long time, and I won’t be a good enough mother to both of my children, because she will require so much more attention.  I’m scared of what other kids might say to Connor about his sister being ‘different.’  Will I know how to handle those situations? I’m scared that I won’t be able to work, and I have to work to support our family.  I’m scared of how this will affect my relationship with Matt, and what his relationship with Abby will be like- it’s hard enough for men to bond with a new baby; it’s not like he had the last 8 months that I’ve had with her.  How will he deal with the stress and with the new responsibilities that will be required of him?  I am a planner for a living, and at this most critical moment in my life I HAVE NO PLAN.
Standing in my circle
My friend posted to Facebook the other day, “God long ago drew a circle in the sand exactly around the spot where you are standing right now. You were never not coming here. This was never not going to happen.”  So, I guess I’m exactly where I’m meant to be at this point in my life.  Though I feel ill-equipped for this difficult and uncertain journey ahead, Abby was always going to be our baby girl, Connor was always going to be her big brother, and if we can surrender ourselves to the unknown, perhaps we’ll find peace and the grace to deal with whatever we’re presented with.  I guess there is somewhat of a plan.  My new motto is “I really don’t know.  I’ll just figure it out when it happens,” because so many of the questions we have right now, just don’t have answers yet. That is an expression I would have scorned in my pre-Abby existence, however if I’m ever going to be at peace with myself, I have to just learn to go with the flow.  And I’m very HoPEful that I will be able to figure things out.  In just 5 weeks from today, we’ll start figuring everything out.

Thank you, Donna, for sharing your perspective with us, and thanks to our followers  for reading the first entry of our series, Perspectives. We HoPE you were able to gain further insight into living with a prenatal diagnosis of HPE. We are accepting more submissions, so please email us if you are interested in submitting your story! Again, we are seeking perspectives of the various phases of the HPE journey, including prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE.

Perspectives: Living with a Prenatal Diagnosis of HPE

This entry is the beginning of a series called, ‘Perspectives.’ We will be bringing our readers a variety of perspectives, shared by HPE parents in different phases of the HPE journey. These phases include prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE.

This particular entry was submitted by Donna, a mother living with a prenatal diagnosis of HPE. She is currently 34 weeks, and awaiting the birth of her daughter. Many of you reading this may be able to relate to this experience, if you are a HPE parent that received the diagnosis during pregnancy. I’m sure it will take you back to that very day when you learned about your child.

If you are a HPE parent who didn’t receive the diagnosis during pregnancy or you are not a parent of a child with HPE, and just following/supporting HoPE, you will definitely find this entry interesting. This mother’s perspective will give you insight into what it’s like to find out you are expecting a baby with a life-threatening condition. The entry is somewhat lengthy, so we are separating it into two parts. The following is ‘Part One’ of Living with a Prenatal Diagnosis of HPE…

Waiting for Abby: The story of my pregnancy, as of 34 weeks…

Getting the news
In June of this year, I went to our routine 18 week ultrasound. Matt and I decided not to find out the sex of our baby this time around, and it seemed easier for me to just go alone.  I made sure the radiologist gave me plenty of pictures to share afterward.  When the radiologist suggested I head upstairs to my OB’s office to get the ultrasound results, I thought it was a little odd, but proceeded nonetheless, just as happy as when I arrived that day.

What followed has changed me completely.  It changed how I look at myself as a mother, how I look at my son, and my view of God in my life.  And, I’m very aware that my life is going to further change in ways I can’t imagine now.  Dr. Bowling, the doctor in my OB group who happened to be available, met me that day for the first time under what I imagine are some of the least desirable circumstances to meet a patient.   After introductions, she told me that there was a significant amount of fluid on the baby’s brain and it was there in place of brain tissue.  The head also appeared to be a bit enlarged, tracking a little over a week ahead of the rest of my baby’s growth.  This indicated some type of chromosomal abnormality, and further testing would be needed for clearer information.  Can you head over to the Prenatal Diagnostic Center for a Level II u/s right now?  If you can’t drive, we can arrange for someone to take you.

Up to this point, I was fine- I tend to be analytical and quite pragmatic by nature, so I wasn’t falling apart over the possibility of my child having a problem; no, at this point I thought, “Alright, u/s isn’t perfect and we need more tests to determine what’s going on.  Ok, let’s go get these tests done.”  No tears, no real worry.  Just doing what needs to be done next.  I don’t even think I called my husband yet at this point, as I saw no reason to make him worry at work, until I had something a bit more concrete to share.  So, two blocks away at the Prenatal Diagnostic Center, I had another u/s, met with a doctor, and a genetic counselor who all sat down with me and educated me on the basics of a condition I had never heard of, Holoprosencephaly.

A grim picture
Before they even really got into detail about the condition, they shared the grim statistics and worst case possibilities for what my baby’s life could be like.  Somewhere in all this I did find out that we’re having a girl, and that she would quite possibly never walk, talk, or do much on her own, IF that is, she would even make it through the pregnancy.  IF she is delivered alive, the prognosis would not be good, as the life expectancy for children with this condition is quite short.  Should we stop here?  For some parents this is just too much and we can certainly provide you with information about your options and terminating the pregnancy now, as it is still early enough.

Though I know it wasn’t their intention, it felt like they were assuming I would want an abortion and they were just going to guide me through the steps.  In the weeks that followed, I can’t even tell you the number of times I had a doctor or other specialist suggest that termination was “probably worth looking at.” I was even told that “this was a valid reason to terminate a pregnancy,” as if I was seeking permission or approval from the medical community.  I know that this is a very personal decision, and people have very strong feelings on both sides of the issue, but I was honestly saddened and insulted that it seemed to surprise people when I wasn’t the least bit interested in termination.  Maybe it’s because I’m already blessed to be the mother of my wonderful 4-year-old son; maybe it’s because I was already visibly pregnant and already felt my daughter fluttering around inside of me for a couple of weeks by then; maybe it’s because I’m Catholic.  I don’t know the exact reason, but there was no way I wasn’t going to give this child a chance; I’m a mother! My one concern was that this condition might lead to a very physically painful life, and that was the one thing I could not put my child through.  But our team of doctors agreed that aside from some pain related to surgeries she may need, that was not the case.  From then on, I actually started to feel angry every time someone asked if I was interested in “other options.”

When my husband and mother arrived, the doctor and genetic counselor filled them in on what we had discovered, and then started us on HPE 101.  So many possibilities, so many questions, and no real answers at this point.  Once we left the center and I was in the car with Matt, I finally let myself fall apart.  I cried the hardest most gut wrenching tears, sobbing that came from the deepest part of my core.  I thought I wasn’t going to be able to breathe again.  I don’t tend to show much emotion in public, so after 3 hours of holding it all in, I had an awful lot of sadness and angst and fear to release.

Please, check back tomorrow for ‘Part Two’ of this mother’s experience of living with a prenatal diagnosis of HPE. This will include her experience of sharing the news with family and friends, facing the unknown, and the conclusion of her story…for now.

People First!

Written by Carly Lowden

While you are reading HoPE, you may notice I say things like, “The child with HPE” or “The adult with HPE.” This may sound kind of wordy and repetitive, but there is a reason for it! You won’t hear me say, “The HPE girl” or “The HPE teenager.” Here’s why…

Have you ever heard someone say, “He’s an Autistic kid” or “You know, the Down Syndrome girl.” Or in the HPE community, you may hear, “The little HPE boy.” You may not realize it, but this is offensive to some people with special needs and their families. Some of you may be thinking, wait a minute- I have a child with HPE/special needs, and I don’t find this offensive. I didn’t even know there was anything wrong with it! Please, let me explain…

In the world of special needs, there is a phrase called, ‘People-first language.’ I was first introduced to this term, while pursuing my Bachelor’s Degree in Special Education. People-first language is exactly what the phrase says… putting people first! In this case, it’s putting the person with special needs first, with their disability second. When you say, “The Autistic kid” or “The HPE girl” it’s almost like you are dehumanizing that person, or defining them by their disability. This made sense to me as a teacher of children with special needs, and it makes perfect sense to me now, as a mother of a child with special needs!

From a personal perspective, when I introduce my daughter to someone new, I want them to see Abby. Not HPE Abby! Abby is a beautiful girl, just like all of the other children with or without HPE/special needs. This is how I want the world to see her! I don’t want the world to look at her and see her HPE. Yes, HPE is a part of Abby and that’s why we are all here, but she is a person, before her HPE!

So, there you have it… the explanation as to why I may come across as wordy when speaking of our kiddo’s with HPE, but there’s a good reason behind it! Please, keep this in consideration as you speak of people with disabilities. 🙂

In the works…

Thanks for stopping by HoPE!  Don’t forget to scroll down the page, to read HoPE’s first entries! Here’s a sneak peek at what you can expect to see on HoPE, in the near future…

~Child of HoPE: We will be regularly featuring a child/adult with HPE! The purpose of this entry is to give more insight into the life of a child/adult living with HPE. Of course, you can go to HoPE’s Blogroll anytime, and learn more about any of the kiddo’s with HPE, by clicking on the link to their webpage/blog!

~ Getting into the groove: HoPE will be featuring a new series about music! Music often helps us get through different phases in our lives. We want to know what kind of music HPE families listen to, as they experience different moods. We want to help create a playlist for different moods/themes! We are seeking songs for encouragement; songs about motherhood; songs to make you feel happy; songs when you feel reflective; songs to help you cry; songs about determination.

~ HoPE around the World: There are a number of HPE families living in the United States, but there are also several HPE families living around the world. We plan on featuring these children and their countries!

~Perspectives: HPE families experience different phases. These phases include prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE. We think it would be interesting to hear different perspectives from all of these phases, and share them with our readers. We are accepting admissions now!

~Guest Authors: There are several blogs and webpages written and maintained by HPE families. (You can view these under the HoPE Blogroll.) With so many writers and bloggers in the HPE community, we want to invite those individuals to submit entries to HoPE, as this blog is for everyone! If you are interested in submitting an entry to HoPE, let us know!

~HPE Gear: It’s that time of the year again…Fall! In the HPE community, that means it’s fundraising time for FFH (Families for HoPE!) This year’s fundraising efforts are in the works, and we will soon be bringing you info on how to purchase your HPE gear!!

I need to warn you that it’s contagious…

As a parent of a child with complex medical needs and the potential for recurring hospitalizations, the very last phrase we want to hear is, “it’s contagious”; however, when it comes to laughter, being contagious is welcomed and encouraged.  Laughter is good medicine for a stressed-out, sleep deprived parent.

When we laugh, we trigger the release of endorphins and serotonin—the feel good hormones that create the feelings of euphoria, love and happiness.  As well as triggering endorphins, laughter also suppresses stress-related hormones in the brain, relaxes muscles, enhances respiration and circulation, and even oxygenates our blood, which allows us to think more clearly.

Throughout my son Sammy’s life, we laughed a lot.  We said silly things, made silly faces, and sang silly songs.  Sammy experienced seizures, and it seems ironic to me that even some of Sammy’s seizures presented as smiles and chuckles.  His signature photo that puts a smile on everyone’s face…that big smile was a seizure.

Six weeks after Sammy passed away, I was invited to a girls’ weekend.  The girls were three other women who had also experienced the death of a child—two were HPE moms and one was the mother of a young man who passed after a life-long battle with cystic fibrosis.  One of the ladies rented a log cabin for the weekend, and we made plans to meet there on a Friday evening.

We all brought scrapbooks and photos of our kids, and for the first few hours, we looked at pictures and shared stories about our kids’ lives and our experiences.  There were a few tears at first, but after a while, there was laughter…lots and lots of laughter.  The kind of laughter that is contagious; the kind that makes your abdominal muscles get a good workout; the kind that makes you run to the bathroom for fear that you might wet your pants.

The few days I spent secluded in a log cabin with those grieving moms confirmed to me that there was still HoPE even in the midst of my mourning.  I had been infected with contagious laughter, and it was good medicine to my soul.

Do you need some infectious and contagious laughter today?

2006 HPE Family Conference

Flackback Friday – April 2006

HPE Family Weekend and Conference

Indianapolis, Indiana, USA
April 21-23, 2006

Co-sponsored by Families for HoPE, Inc.
the Carter Centers at Kennedy Krieger Institute

The Highlights

The HPE Family Weekend & Conference, co-sponsored by Families for HoPE and the Carter Center at Kennedy Krieger Institute, was truly a weekend to remember! Friendships were created, lives were celebrated, and HoPE was abundant. Here’s a special report on a few of the highlights from the event.

Up, up and away . . .

On Friday evening, April 21, travelers on West 86th Street in Indianapolis were distracted by 130 helium balloons ascending toward the heavens, from the courtyard of the Marten House Hotel and Conference Center, in honor and memory of infants and children who had passed away due to complications of HPE. Their lives were remembered as family members and friends released a balloon tagged with their identifying information. To date, we know that Anysia’s balloon was found in Lima, Ohio and the string and tag of Harrison’s balloon were found near a pond outside of Buffalo, New York, where mysteriously, a frog was also discovered hopping about!

Welcome to Indy

For many of the 26 families in attendance, this was their first visit to Indianapolis, so it needed to be extra special. Inspired by children’s book Twelve More Little Race Cars by Scott and Judy Pruett, a racing theme was chosen for the kick-off dinner. The highlight of the evening was each family’s moment in the “HoPE Raceway Winner’s Circle”. Each of the children diagnosed with HPE is a winner, and at HoPE Raceway all winners were presented with a trophy declaring him/her a “Champion of HoPE” as they sat behind the wheel of a custom-designed race car (wheelchair accessible, of course) bearing the names and logos of all of the corporate sponsors of the event.

What would a victory speech be without thanking those who made the victory so sweet? Special thanks to Indianapolis Motor Speedway Corporation, Tony Stewart Foundation, Women’s Auxiliary of Motorsports, Hendrick Motorsports, Party Time Rental, and Build-A-Bear Workshop. Personal thanks to Joey Arnold, Myrian and Keith Wiggins, Judy and Scott Pruett, Cheryl Riley and especially to Debbie and Bruce Timmerman for realizing the vision and making the racecar a reality.

Gentlemen, start your engines!

A group of dads and grand-dads descended on the Indianapolis Motor Speedway for “Rookie Orientation” on Saturday morning. The excited wanna-be racers were shuttled to the track by driver Ron Clark aboard a bus provided by Traders Point Christian Church. Upon arrival, the rookies’ excitement reached a fever pitch as they were greeted by the sound of roaring engines from the Richard Petty Drivers’ Experience session in progress. With the adrenalin still flowing, the racers visited the IMS Hall of Fame Museum where they learned about the history of “The Greatest Spectacle in Racing”. Each rookie could only imagine how the legendary Ray Harroun, Dan Weldon, Jeff Gordon and Tony Stewart felt as they climed the fence, took the checkered flag, kissed the yard of bricks and took the ceremonial swig of milk! After all that stimulation, the racers made a pit stop at the museum gift shop to pick up a few souvenirs. Track officials confirmed that a good time was had by all!

Meanwhile, back at the hotel . . .

The moms and grandmothers spent the morning being creative with a scrapbooking activity led by volunteer Kayce Auman. The ladies also participated in a beaded bracelet project designed in “assembly line style” so that every bracelet created would have beads placed on it by the hands of each person in the room. These bracelets would serve as a symbol of HoPE and a constant reminder that “We’re all in this journey together!” Special thanks to Danielle Tooley for donating the beads and wire for this project.

While the moms were occupied with their projects, the children were having fun too. The girls ages 6 and up, participated in a flip-flop decorating activity led by volunteer Anne Lennon of Sally Huss Gallery. All of the girls were quite fashionable at the pool with their newly-decorated flip-flops! The boys ages 6 and up were a busy group as they participated in a scavenger hunt supervised by volunteers Phil Parelius and Rob, Jan, and Nick Meyers.

Other activities also included singing, dancing, playtime, story time and a craft project. In the afternoon, there was a visit from several service dogs affiliated with the nonprofit organization, Canine Companions; also, the siblings participated in SibShops, workshops intended to celebrate the siblings of disabled children, conducted by a group from Easter Seals Crossroads.

Taking a parade lap on a “Holiday” weekend!

The theme selected for Saturday night’s events was appropriately titled “Merry Happy Holidays”. Many of the families and children with HPE have celebrated at least one holiday within the confines of a hospital room. A few of them can no longer count their in-hospital holidays on just one hand. In appreciation of all holidays—past, present and future—each family celebrated the special days of every season all in one night, and no one had a passing thought of the hospital!

Each child presented in costume and participated in a colorful parade winding from their rooms to the hotel ballroom where the evening’s festivities commenced. It was quite a sight to behold as superheroes, princesses, firemen, clowns, and various other characters marched their way into the hearts of the observers along the parade route!

Inside the ballroom, the children collected treats and favors in bags they had decorated earlier, from each table pertaining to the various holidays.

After dinner, thanks to the in-kind donations of many individuals and corporations, no one left the ballroom empty-handed as the door prizes were generous and abundant. Of particular note were in-kind donations from Rifton Equipment (bath seat), AdaptiveMall.com (feeder seat), and Enabling Devices (adapted toys and switches). Several children were able to immediately benefit from the donation of these items which can often be very expensive and difficult to obtain through health insurance plans.

Parting is such sweet sorrow . . .

After a night of sleep, all of the families gathered one final time for breakfast on Sunday morning. It was a time for exchanging contact information, taking photos, and sharing hugs and handshakes to reinforce the new friendships made over the course of the weekend. Even though some felt weary on an early Sunday morning following a very busy weekend, there was a spirit and enthusiasm beginning to fill the air. Not only had the families connected with other families so similar to their own, they were discovering a renewed sense of HoPE.